I added numbers incorrectly, spelled words incorrectly, read passages from one-page short stories incorrectly. The tech timed my reading. I answered questions about the meaning and content of the stories. Dammit! I know how to read. Why are they testing me? I drew a clock and she asked me to draw noon and six and three and nine. I did it correctly. Ha! I showed her. I wasn’t so stupid. When she asked me to draw nine-thirty, I got the minute hand mixed up, and did it again on six-thirty. I couldn’t put blocks in sequence—building blocks, the kind that children play with. Just put the damn blocks in order. When the grad student wrote things down, I knew it meant I was stupid and he was making note of it. We took a break halfway through and I wanted to go home, because I didn’t see the point of taking a test that I couldn’t have prepared for. “No right answers,” they insisted. Yeah right, I told myself. If there weren’t right answers, why are we doing the test?
At the conclusion, the staff neuropsychologist visited with me and asked questions about my work, home, and family life. What kind of medicine did I practice? What was my job in the military? Did I drink or use drugs? How did I cope with illness and stress? Did I know I had had a stroke? Did I know what that meant for my long-term prognosis? Had I ever been depressed or sought mental health treatment? Hell yes, I knew what a stroke is, and hell no, I’m not crazy. After the barrage of questions the neuropsychologist introduced me to my cognitive therapist. Her name was Cher, like the singer, and she was half my age. She had a tattoo on her ankle and she spoke confidently and professionally. And despite my professional doubts about therapists in general and about cognitive therapy and neuropsychology in particular, she made me feel at ease. Maybe she read my hesitation as I looked around her room; maybe she was sensitive to our age and professional differences. However she knew I was skeptical, she addressed it without a blink.
“Dr. Kerstetter, my name is Cher and I’ll be working with you.” She offered a handshake as she took control. “Have a seat and let’s go over a few things and then I’ll see you next week with your results. I understand you’ve had a stroke and that you’re a physician.”
“Yes, I had an aneurysm and surgery didn’t go as planned.” I glanced around her office. Books and professional journals about neurology and neuropsychology filled the bookshelves, and she had several models of color-coded plastic brains.
“I see your wife isn’t here today, and that’s not unusual for the testing day. Will she be joining us next week?” Cher took notes as she talked, but she also made eye contact that kept me on track.
“She’s planning on it, but she had a prior commitment today.”
“Good. I just want to emphasize how important it is to have her attend that session.”
“Sure. How many sessions will I have,” I said impatiently.
“Depends.” With a single word, Cher defined the essence of therapy. It did depend—and there was no amount of my impatience that would make it go faster.
“Oh. I thought it might be a set number, like ten or so. I don’t know anything about this kind of therapy, so I don’t know what to expect.”
“Everybody has different needs, so it’s hard tell exactly how we’ll proceed and how long your therapy will last. Any questions you have of me?”
“Well, I don’t know exactly what you’re going to do. I know I did poorly on the tests. Are you going to retest me?”
She gave a courteous smile. “It’s not a matter of doing poorly or not. They’re diagnostic tests. They give us information to guide our therapy. Yes, we retest to monitor your progress. I can tell you’re concerned about the results, but please don’t be. They are a starting place and, yes, they make everybody self-conscious about their intelligence.”
I didn’t want to ask direct questions about a damaged intellect, because doing so would have revealed my fear that the tests had marked me as unintelligent. It wasn’t that I didn’t trust Cher, but I didn’t trust the testing, the process, and the significance of doing poorly on diagnostic tests. Maybe that actually translated into a lack of trust in her.
Instead of dwelling on the issue of damaged intellect, Cher turned the conversation to my roles in the Army and in emergency medicine and asked me to explain each of them. She sat forward and listened attentively as she took notes.
When I left her office, I considered her professional enough but still much too young for a therapist. And I wondered if a therapist named Cher with an ankle tattoo and a room full of books and models of the human brain could help me recover. I decided she probably could not, but that I would give it a go anyway. I’d try the whole neuropsych-testing, cognitive-restructuring, mind-twisting, and suspicion-raising thing called stroke rehab, and in the end, if it didn’t work, well at least I tried.
—
The staff neuropsychologist met with me for the first half of the next weekly session. He reviewed my test results and walked me through a list of cognitive injuries and outlined a therapy plan for each one. Several deficits shared a common theme, the loss of memory. Short-term memory had been markedly affected, as had long-term memory. Defects in executive functioning were pronounced and kept me from structuring and organizing information for complex problem solving. Fine motor skills, elicited by the metal peg exercise, showed strain, especially on the right side. There was more. Reading speed and comprehension measured in the third percentile—third, not thirtieth. My attention and focus resembled that seen in a patient with attention deficit disorder. And there were concerns about a confounding issue of PTSD from my recent combat tours, which to my thinking was not an issue. So, by the end of the first thirty minutes of that second cognitive therapy session, I had been given a crap load of things to consider about my brain and my stroke, if considering was even something I could have done or wanted to do, given my cognitive status. As the neuropsychologist highlighted each specific deficit, together they seemed to grow like an accretion of malignant cells in my brain, all wanting to invade as many normal cells as they could and render me useless and untreatable.
In the second half of the session, Cher asked me about my reaction to the test results as she took notes. “Tell me about your test results,” she said.
I couldn’t answer her question spontaneously because I didn’t yet know what my reaction should be. Should I have been pissed or depressed or sad? Should I have been thankful that I was still alive and that my stroke hadn’t killed me outright or dropped me into a coma? Maybe I should have been grateful that I wasn’t strapped in a chair and shitting my pants or drooling on my shirt. I didn’t know what to think because I wasn’t thinking. I was revisiting my life, the one I knew as a doctor and a soldier and the one where things generally went the way I wanted them to go. And I was questioning whether my brain damage was more like the truth of a broken arm or more like the truth of an amputation.
I finally answered: “It sounds like I have no brain.”
“Oh, you have a brain,” she said thoughtfully and gently, “and it’s full of valuable information and experiences.”
Her words seemed to counterbalance the emotional pain I was feeling. Cher put her pen on her desk and made eye contact. “Dr. Kerstetter, it’s important for you to understand that a stroke does not make you less intelligent. It makes memory formation and recall difficult, but we’ll work together to help you compensate. A stroke can’t make you less than the person you are.” Her message to me was as powerful as it was comforting. I needed her insights to unravel my fears. I was scared for my future, for my brain and my life, and I needed to hear and understand exactly the message she had for me, because without it, even hope was broken.
—
In the next weekly visit, Cher started me on list making and journaling. It was a technique to pull me into the therapeutic process and to get my mind reengaged on the skill of focusing on details. I was lousy at it. Sporadic. Incoherent. Sloppy and incomplete. But I did it. I wrote pages of notes and fragments of thoughts. I made rudimentary lists. They were supposed to help me with
executive functioning and ordering of tasks, something of a paper brain. If I didn’t make a daily list of things to do, I often did nothing except go to doctor or therapy appointments. I was to review the lists with Collin each night or morning. I usually forgot and Collin had to rescue me. I tried an electronic PDA with a calendar and a to-do list and a reminder app. I got it all mixed up with a paper list and a desk calendar where I wrote appointments. I said “Shit” and “Damn” and tore up my lists when they didn’t match and I couldn’t figure out which one was accurate. Cher would go over my list making in the session. About ten weeks into therapy, I grew overly upset in a session when she mentioned lists.
“Were you able to track your appointments and tasks this week?” she asked.
“No,” I answered abruptly. “I don’t need a list.” I wasn’t trying to be mean-spirited or caustic, but it had become apparent to me that my mind was wild and hurt and on the loose. I couldn’t make a list, much less keep track of one.
Cher paused and looked at me. “Tell me what’s going on,” she said.
“This isn’t working,” I blurted. “I would have been better off dying in Iraq. At least it would have had a purpose. Now I can’t even manage a list, let alone a patient.” I stood from my chair. I wanted to run or hide, but all I could do was weave in my ataxic stance. Cher asked me gently to sit back down. I felt trapped and wanted to free myself from therapy because I was a soldier and a doctor and if anybody could fight their way out of a stroke, it should have been me.
“Let’s just sit for a moment,” Cher said calmly. “Take some slow deep breaths.” After I settled down, she continued. “And how many weeks have you been making lists now?”
I didn’t answer. I looked at the plastic brains on the bookshelves.
“I think you’ve been doing it for less time than you would give a patient in your care,” she said.
“I don’t want to be a patient and I don’t want my kids to see me like this. I feel dead!” And when I said it, I put my head in my hands and stared down at her desk and said nothing for the longest time, and I bit the tip of my tongue to keep from showing emotion.
She let me sit in silence for a while, then finally said, “But, Dr. Kerstetter, you’re not dead. You are still a doctor and you are still a soldier, and you’re experienced and intelligent. A stroke cannot make you less than who you are. Do you understand that?”
When I heard her words, I wanted to weep and wail and let my tears finally run free and fill up her therapy room and wash away my anguish and fear and loss. And all my suspicions about Cher’s lack of military knowledge and her tattoo and her age, her profession and the fact that she was not a doctor, all disappeared. She told me I was grieving for the parts of my body and brain that were injured, and that I likely feared I might never recover and would never be a doctor or a soldier again. She was right. Exactly right. And in that session I finally understood clearly that I had clung to those identities, soldier and doctor, because I felt they made me who I was and a stroke had broken me. But there I was, still alive—injured, to be sure, yet still quite capable of thinking and fighting and moving forward.
Before we concluded, Cher said she was fortunate to work with me and asked me to explain some things about military medicine and how doctors treated patients in a war zone. I asked her for a marker and said it would be easier to draw her a diagram on her whiteboard. As I drew a line sketch of a military battalion and the multiple echelons of care, I was surprised that I could remember details about the military. After five minutes I had drawn a schematic of an Army medical unit in war and had explained the medical evacuation system, how we transported patients from the battlefield to military hospitals in the States. She thanked me and said what a great job I had done. The next week when I returned, the drawings were still in place. She asked me to expand on the explanations: “Tell me the difference between a battalion and a platoon, between the responsibilities of a captain, a major, and a colonel. Where is the forward edge of the battle? What is asymmetric warfare? What does a flight surgeon do exactly?” I answered her questions, and it took the entire session; and when I was done, I felt like a flight surgeon again, but I was a bit puzzled about my answers.
“How could I recall those military details and no other details about medicine or what my wife told me to do this morning?” I asked.
“All strokes are different,” she said. “You have mixed deficits. Your medical knowledge is most likely still intact, but the neural pathways have been disrupted and are not easily accessible. Right now, you have short- and long-term memory deficits and neither are complete, but you also have attention deficits, which makes things trickier to manage.”
She pulled up my MRI on her screen and we counted the infarcts and the different levels of brain involvement: cortical, white matter, gray matter, motor, sensory, mid-brain, cerebellar, and brainstem. “If you had a patient with that MRI, would you tell them to expect a simple, uncomplicated recovery?” she asked.
“Not really,” I said. “I see your point.” And I did see, or at least I gained some initial insight. I began to understand that my stroke had hurt me more than I deemed possible and that ongoing therapy was essential to my recovery.
“Dr. Kerstetter, you’ll get through this,” Cher said confidently. “You have a great capacity for learning. Look at what you’ve done in your life. Yes, you have some significant neurological deficits—nobody here is going to tell you otherwise—but you also have a therapist and a team of doctors who are willing to help you. And we need you on that team.”
That session was a crossing point, a breakthrough. The hard shell of my professional personality cracked just enough to allow some room for a therapist to draw out my military and medical experience as a tool in our therapeutic strategy. And although I didn’t immediately transform into a model patient and didn’t automatically rid myself of denying the reality of my stroke and its sequelae, I did make a mental crossing that allowed me to trust a therapist, and that, I would eventually learn, helped me move from one stage of healing to another, from denial toward acceptance.
The next week after our breakthrough session, Cher started me on a rehabilitative reading plan. My first task was to read a novel with a simple plot—follow-up appointment in one week. I was supposed to read it with Collin and discuss the book as we went through it. Cher intentionally left the choice of the book to me. At home, I decided to do things on my own. There was just something too remedial about the assignment, and I balked at having to read with Collin. She had spent time in our neighborhood grade school as a reading mentor. I didn’t need mentoring or a reading coach, so I chose a book about theoretical physics and string theory. As a college student, I was fascinated by the subatomic universe and the cosmos, so why not start in earnest to understand it? But after “reading” numerous chapters about folding gravity and time warps and vibrating subatomic strings, I couldn’t explain a single concept to Collin or Cher. I probably could not have understood string theory prior to my stroke. I didn’t understand my reasoning for selecting a physics book, but it may have reflected a belief that I was above reading therapy. The appropriateness of my selection, Cher pointed out, was one of the goals of the task.
I didn’t immediately give up on string theory, thinking perhaps my brain just needed a little warm-up time. I kept on pushing through it even though nearly every word was incomprehensible. In a follow-up appointment, Cher was less than impressed, maybe even stern. I did think, however, she was amazed at my tenacity, however misplaced it was. She gave me high marks for denial and zero marks for coming to grips with the truth. Again she pulled up my pre- and post-stroke MRIs on her computer screen and asked me if I could interpret the images. I could, with some difficulty. I noted the numerous small lesions of dead brain on the cerebral cortex and in the midbrain and on the brainstem. I muddled through what the lesions meant in terms of brain function and how a person with that sort of brain would experience cognitive difficulties. She asked me to help
her construct a therapeutic plan for cognitive rehab.
“That’s not my field,” I said. “But I’m familiar with emergency neurology and the basic neurosciences.”
“Good. So let’s try this: I’ll give some general ideas and you can tell me if you think the plan is reasonable or not.”
She asked me if reading would be a good task for cognitive rehabilitation.
“Yes, that’s a good idea,” I answered.
“Speed of task processing. Slow or fast?”
“Well, you need to go slow at first.”
“Any particular reason?” she asked.
I thought I could sense her direction. “You have to avoid confusion. If the patient gets confused by the therapy, then it’s not therapeutic.”
“Good. Good observation.”
My mind wandered off a bit. Ha, I knew I could do this. I’m so damned smart. I should be a therapist.
“Graded difficulty?”
“Huh?”
“Difficulty,” she said. “Should there be a gradual or graded difficulty in the exercises?”
“Oh, I was back on slow versus fast.”
“Okay, let’s focus here. You with me?”
I think I blushed a bit. “Yep.”
“Would you introduce new reading material based on difficulty level, with basic reading first?”
“Yes. You have to bring the patient along slowly and then advance the difficulty as progress is made.”
“And where would string theory fit into the plan, if at all?”
“Ah…at the very end?”
“And where do you have it?”
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